My son (almost 23 months) was diagnosed at birth with a rare endocrine illness and spent 2 months in nicu. He was assigned an endocrinologist, who we’ve seen every 6 months, and a paediatrician who we’ve seen every 3-6 months. When we see the endocrinologist it’s in a joint clinic with the paediatrician.
Back in February they did some tests and told us that the original illness had resolved and changed his diagnosis to one that still causes low blood sugars but which is less serious. His paediatrician has been very dismissive about the new diagnosis - told me he didn’t need to be monitored any more unless he was sick. I’ve asked a few other questions and the responses have been guesses / looked up on google (fine, not her area of specialism but if you don’t know maybe ask the endocrinologist). From the research I’ve done I knew he needed more monitoring so I’ve done it anyway (which is good as I’ve picked up and treated several hypos). Went into the appointment yesterday expecting a lecture for testing him.
He had a developmental regression in March (seeing someone about that in a few weeks) and he had a squint so we saw an ophthalmologist who diagnosed a disorder of the visual pathway and he suspected a related neurological problem so sent us for an MRI.
Yesterday we saw the paed and the endocrinologist. First of all, the endocrinologist confirmed we should be testing his sugars every morning, she looked pretty sheepish as she had given completely contradictory advice to me on multiple occasions. He also gave a different care plan than what I’ve been told by the paediatrician.
Then she looked at the MRI report and said the only thing that showed up was the vision disorder, everything else was normal. So we left feeling really relieved.
Been to see the ophthalmologist this morning who told me that actually the mri showed some brain damage, what he described as “a few small patches in his brain”. When I questioned further he told me it is a type of scarring in the white matter of his brain and gave me the name for it. He said that because the patches are small, it “probably isn’t an issue” but given the difficulties he’s having it seems like a massive coincidence if it’s not related. When I looked it up, it said that symptoms first present between 1 and 2, and that amongst other things it causes learning disabilities and vision problems. Given that this is exactly what’s happened to DS, it seems strange to dismiss the possibility it’s connected.
I’m really upset that they found that my son has brain damage of some kind and she didn’t tell us. If it hadn’t been for the ophthalmologist appointment today we would have had no idea. I appreciate it may be mild and I appreciate there’s no treatment but surely you should be fully informed of findings on scans and other tests?
It’s just gotten to the point where I don’t trust them at all. There have been other cock ups along the line which are all fairly minor in isolation, but in combination have affected my ability to trust they’re doing everything correctly.
Am I being unreasonable? I hate to make a fuss, I really don’t want to complain or cause a stink, but I’m so upset by the whole thing. The worst part is that he had several ultrasounds of his head as baby and this should have shown up then, and in fact I vaguely remember the person performing the scan saying something about ventricles but after the report came back I was told it was normal.
I just want to get my son whatever help he needs and I’m not sure what to think at this point. Would you try and get a referral to someone else?
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To be upset with paediatrician? WWYD?
22 replies
SinkGirl · 10/08/2018 19:41
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